IVIG and Mino

[BJK7493@aol.com]

Good morning.
I just wanted to wish every a Happy Holiday season and a healthy New Year!
I currently just finished my 4 month of IVIG and Mino. I am feeling remarkably well.
Had to go out and buy a wig last weekend though as my hair is getting so thin from the Dermatomyositis!
I cannot believe what a 6 month time span can bring. I feel fortunate that I have very little joint pain now and the skin
issues are resolving.
I am looking forward to spending time with my family over the Holidays.
May all you have a blessed holiday season!

Julie

[Maz]

@BJK7493@aol.com wrote:

I am feeling remarkably well.

I feel fortunate that I have very little joint pain now and the skin issues are resolving.

Julie, this news couldn’t have been better just as the holiday season gets under way! How fantastic to hear you are now doing so well. Thanks for stopping by to share your good news!!! Enjoy every minute with your loved ones over the holidays…life doesn’t get much better than this. 😀

[Tonya]

@BJK7493@aol.com wrote:

Good morning.
I just wanted to wish every a Happy Holiday season and a healthy New Year!
I currently just finished my 4 month of IVIG and Mino. I am feeling remarkably well.
Had to go out and buy a wig last weekend though as my hair is getting so thin from the Dermatomyositis!
I cannot believe what a 6 month time span can bring. I feel fortunate that I have very little joint pain now and the skin
issues are resolving.
I am looking forward to spending time with my family over the Holidays.
May all you have a blessed holiday season!

Julie

Hi Julie,

Have been thinking of you. Glad you are feeling better. I just came from the rheumatologist today. I asked about IVIG but he still doesn’t feel like I am a candidate yet. My symptoms are improving. I had about 3 really good weeks but then the inflammation came back. So will see what my labs are today. Hoping for good news.

Happy Holidays,

Tonya

[Parisa]

Julie,

Glad to hear that you are doing better! Is that the end of the IVIg or will they consider extending the treatment?

[BJK7493@aol.com]

@Tonya wrote:

@BJK7493@aol.com wrote:

Good morning.
I just wanted to wish every a Happy Holiday season and a healthy New Year!
I currently just finished my 4 month of IVIG and Mino. I am feeling remarkably well.
Had to go out and buy a wig last weekend though as my hair is getting so thin from the Dermatomyositis!
I cannot believe what a 6 month time span can bring. I feel fortunate that I have very little joint pain now and the skin
issues are resolving.
I am looking forward to spending time with my family over the Holidays.
May all you have a blessed holiday season!

Julie

Hi Julie,

Have been thinking of you. Glad you are feeling better. I just came from the rheumatologist today. I asked about IVIG but he still doesn’t feel like I am a candidate yet. My symptoms are improving. I had about 3 really good weeks but then the inflammation came back. So will see what my labs are today. Hoping for good news.

Happy Holidays,

Tonya

Hi Tonya! Glad to hear you are doing better. The IVIG has made a huge difference in my symptoms over the last 4 months. I actually feel “normal” like I am not sick at all! I still have a few days when the weather changes that I start to ache but there has not been any new skin lesions ect. Are you having problems with Alopecia-hair loss? My hair loss has bben substantial so I had to go out and get a wig 2 weeks ago. Hopefully it will start to grow back in! Please give me a call sometime. 515-770-7654. I would love to get together with you for coffee or a soda.
Thanks Jullie

[BJK7493@aol.com]

@Parisa wrote:

Julie,

Glad to hear that you are doing better! Is that the end of the IVIg or will they consider extending the treatment?

Hi Parisa, Hope you had a nice holiday time with your family. The insurance company only approved me for 4 months because of the end of the year being at the end of the 4 months. They said to contact them in January and they would approve more. My Rheumy wants to see how I do not having one in January to see if we can get them spread out alittle. His goal is to get me to quarterly infusions which would be nice for me and the insurance company. They are still trying to get me an earlier appt with the Mayo clinic in Rochester Minnesota but right now the earliest I can get in is August 2011! My only complaint is the hair loss-which is significant. I had to go out and buy a wig 2 weeks ago! Well I hope your husband is still doing well with his infusions. I can’t believe what a huge difference it has made for me.

Take Care
Julie

[Parisa]

Hi Julie,

My husband is still doing well. He initially received IVIg every month. After he was doing well (he was very ill when he started) which was two years in, he started to spread the infusions apart. He’s done every six weeks for the past half year or so and now he’s going to try every two months. He feels so well he’d like to just stop completely as he dislikes the inconvenience of the infusions and the flu like symptoms he gets. I on the other hand don’t want the disease to get a toehold again and have to remind him of how sick he was before and that we never, ever want to go back to that place again.

My husband’s hair thinned out and went straight at one point. We just laughed (and cried!) and said even his hair was too tired to curl. I chaulked it up to the prednisone he had been on but who knows it could also have been the disease. As his circulation and general health improved so too did his hair and now he has a good head of curly hair for his age. He even has hair growing again out of his ears. Never thought we’d be happy to see that!

[Author]

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